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Second Opinion Or Have Faith In Current Dr

hsingmomto3

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hsingmomto3 Newbie
hsingmomto3
Posted

My daughter (age 11) has had a very difficult few years.  To make a long story shorter in summary she has ADHD and was diagnosed with absence seizures in May 2013.  She has very bad food allergies to dairy and tree nuts since birth.  As a baby she had chronic ear infections and had ear tubes and a tonsil-adenoidectomy. She has a history of failure to thrive as an infant and then last year as well when she went 2 years without measurable, sustainable growth in weight or height.  And most recently diagnosed with intermittent explosive disorder and in January she had uveitis.  

 

In June last year we saw a gastro and she did lab work and the first biopsy.  The results of this biopsy showed an elevated celiac count in her intestine but no blunting so gastro didn't want label celiac just yet.  Her labs showed that she was low Vit D, and her prealbumin level was low at 16 (normal 20-40).  She also had a pretty extreme case of eosinophilic esophagitis.  We did some skin allergy testing and she reacted to beef, garlic, watermelon, white potato, cherry, egg and lemon.  We avoided these foods after this.  Follow up appointment in October and weight gain of 1 pound.  More labs ordered, results of these were normal except pre albumin was even lower at 11.  

 

In December we did another EGD to check on the EE.  It looked much better, still has an elevated celiac count with no blunting and her dinner was still in her stomach 16+ hours after eating!  At her follow up we decided to give gluten free a 3 month trial to see what happens and check her pre albumin again after she is on the curve.  3 months later she has a weight gain of 2 pounds and 1.5 inches!!  YAY!  She is almost on the growth curve so we checked the pre albumin late March.  It has come up to 19 so it is still low but much much better than it was.  The only thing that we did differently is gluten free.  

 

So to me this sounds like gluten is definitely damaging her body.  However gastro is still not wanting to say celiac or even non celiac gluten intolerance.  She also isn't on board with continuing her on a gluten free diet in the long run.  Should I get a second opinion on this or just keep the faith that at her next follow up we will be able to get a diagnosis.  I am definitely keeping her on the gluten free diet because she is finally growing and that is awesome.  I should also add that I am non celiac gluten intolerant and have been gluten free 2 years now and have been off my migraine meds for over a year.  I'd love to hear your thoughts.  Thanks!

Courtney

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cyclinglady Grand Master
cyclinglady
Posted

I would get another opinion. Get copies of all test results to present them to the new GI.

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